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CuriousCase

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Mar 11, 2014
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Learn about ALS
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US
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Oregon
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Eugene
Hello all,
I am posting here after much time spent reading the forum and seeing all the thoughtful replies from ALS sufferers. I am mindful that I may be overreacting but I would love some feedback from you all.
On Christmas night 2012, I woke from a deep sleep feeling like I was falling out of bed. I laughed it off and went back to bed, only I kept having a dizzy sensation, like when you've had too much to drink and the room is spinning. When I awoke I felt miserable. I haven't felt like myself since, honestly, and now I am having more and more physical symptoms. In early 2013 I got glasses as my eyes were beginning to bother me. I chalked that up to years of working at a computer and the heredity of having parents who wear them. They seemed to help the dizziness.
Slowly the dizziness has subsided, but has been replaced by a multitude of other symptoms, intermittent feelings of intense hunger even when I've just eaten, shakiness resembling low blood sugar, brain fog, and now the most troubling part--all over aches and pains, easily cramping muscles, neck pain, rapid muscle fatigue and exhaustion.
I have read the stickies regarding fatigue vs clinical weakness and believe I understand the definition. But I am concerned, as I always was a strong athlete and now can barely shave without my hands cramping up. I shoveled snow in a recent blizzard and was soaked with sweat and exhausted within minutes. I haven't had anyone notice--perhaps the key--but I notice I occasionally slur my words and fight to find the right ones. I struggle with typing, making many more errors than I did in the past. My short term memory has suffered. My concentration has suffered. Even as I type this, my left elbow feels tight from being in the typing position. My neck bothers me almost all the time--pinched nerve, perhaps?
I am hoping some of the experts can help with some guidance. I am on no medication other than daily vitamins and fish oil, I have seen a GP several times with little luck, and a neuro once for an MRI which was perfectly clean. I of course have the fears that this could be something terrible and hope for any feedback I can get. Thank you and bless you all.
 
The symptoms you describe are not what I have experienced. ALS causes muscle loss. You would see in first in either had or either leg. I you are really worried I would get your GP to refer you to a neurologist and describe what you have observed. I noticed muscle loss first and then had foot drop.

Go Ducks,

Rick( class of '64)
 
Rick,
Thank you so much for your prompt reply. I was a UO student but a lifelong Beaver fan (long story-sorry!) I do have an appointment with the neuro again in early April, hopefully I will learn more then. Many prayers in your continued fight.
 
It sounds like a possible pinched nerve, but if you had symptoms since 2012 you must have visited a GP I presume?

Have you had your thyroid levels checked?
 
We all have similar but different symptoms early on with MND. Some of what you described I experienced early on. The dizziness I had some mornings, but it would go away within minutes after I awakened.
Brain fog and short term memory issues I also experienced. I also am/was pretty athletic, and came into this disease as a physically strong recipient.
My suggestion to you would be to stop speculating and book an appointment with a Neurologist ASAP, preferably at a clinic that deals with MND.
Not knowing can really be detrimental from a psychological aspect, you should prioritize getting closure.
Good Luck........................
 
Kosmos-I went to a GP several times during 2013, wore a heart monitor, had an EKG, brain MRI, more bloodwork than I can count. I showed my blood tests to a friend who is a nurse, she said my thyroid levels were "worth watching" as they rose all 3 times I had my blood drawn.

Bigmark-Can I ask how long you went from first symptoms to diagnosis? From all I've learned about this disease if first "symptoms" were late 2012 I would be seriously impaired by now. I do have an appt with the neuro again in 3 weeks, so I can run all this by him as well.

Thank you both!
 
If your thyroid was high, then I recommend you going to an endocrinologist for further testing, if you go to a general GP, ask to have free TSH taken as well. Good luck!
 
Thank you Kosmos--much appreciated!
 
It does not sound like ALs or MS - I think you need to relax first and foremost. If your MRI and EKG were clear then follow up with your endocrinologist and PCP and stay off this site. Stress does a number on your body.
 
Thank you Tx Daddy's Girl, I agree. Hopefully after the next neuro appointment I will have good news and can put this aside for good.
 
Kosmos-I went to a GP several times during 2013, wore a heart monitor, had an EKG, brain MRI, more bloodwork than I can count. I showed my blood tests to a friend who is a nurse, she said my thyroid levels were "worth watching" as they rose all 3 times I had my blood drawn.

Bigmark-Can I ask how long you went from first symptoms to diagnosis? From all I've learned about this disease if first "symptoms" were late 2012 I would be seriously impaired by now. I do have an appt with the neuro again in 3 weeks, so I can run all this by him as well.

Thank you both!

My first symptoms started about 2.5-3 years ago with bad balance and foot drop. My weakness started about a year ago, along with speech problems. I was diagnosed just two months ago. It took 4 months to get a diagnosis...that is why I recommended that you go to a good neurologist that knows how to screen for MND.
On a side note, my thyroid and labs were within normal ranges, as well as my MRI''s, lumbar puncture, cat scan etc.
As it stands now, I am still walking on a treadmill for 20 mins a day, and recumbent biking 20 mins a day....I resistance train for 1.5 hours 3 times a week, and do floor exercises.
I have to do everything seated, except the treadmill which I hold on to the bars to keep from falling. My voice is just about gone, and I have swallowing/choking issues......but I keep fighting!
 
Bigmark, thank you for taking the time to respond. I have balance issues off and on, but not to the point of falling. I can still stand on one foot with relative ease. I think I primarily just need to calm myself down as I am no diagnostician but the variety of symptoms doesn't jive with what I've learned. My neuro will tell me more. You sound like a brave fighter and I pray for your continued fight!
 
I got a degree from OSU too Class of '68--much more useful than the one I got from UO. :)

Rick
 
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